Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@FizzyOrange - it’s extraordinary what so called intelligent people say. I am totally avoiding one friend because she has a great track record of saying the wrong thing at the wrong time. I haven’t been told a stage and I almost now don’t want to know.

Or indeed anyone who had a breast reconstruction. Which way did you go and why?

Oh yes, what is it with people asking what stage you are at? It seems a really intrusive question to ask and yet I have been asked it numerous times. I came to my OC diagnosis via Haematology where they were testing me for one thing after another for months on end until finally a CT scan revealed the problem. One friend said, 'well, you did know something was wrong' - oh so that's ok then .

FizzyOrange if 18cm weighed a Kg, my combined 35cm must approx 2Kg then ! The rest I have lost must be fat !

I wish I hadn't told anyone in real life. I'm getting lots of "I know that you will have caught this early." Umm my Doctors don't know that so how do you?! And on the other hand people getting all teary and looking sorry for me. At least if anyone I know ever has to go through this I will be better at knowing what not to say!

I think my absolute worst was the person who asked me out of the blue via text if my mortgage will be paid off.

Erm no. Because even if I had life insurance (which I don't think they'll let me have right now) I'd have to be dead for it to pay out. I couldn't even bring myself to reply to that one.

@PhannyPharts that's so shocking! I hope your lack of reply made them reflect.

@Acinonyx2 @PhannyPharts I have my second covid jab tomorrow, a covid test before my colonoscopy on Saturday and the colonoscopy on Thursday.

I had side effects after the first jab, so I'm hoping that my second will be better.

@Recorditnow I think I've got away with no reaction as it's been 8 hours now.

@PhannyPharts yes, I had a nipple sparing mastectomy and immediate reconstruction with an implant. The consultant said I wasn't a good candidate for a reconstruction using my own tissue. He went through the pros and cons of delayed reconstruction versus immediate. I was told I was a good candidate for immediate as the skin was healthy and apart from the cancer am healthy. I discussed it with the breast care nurse too and she said they wouldn't ever suggest immediate reconstruction if they don't think you're a good candidate.
Anyway, I decided to go for it and was aware of the risks etc as I thought I would regret not going for it if that makes sense?
I also have a couple of people who have made the brave/amazing comments. I have no choice other than to go through this if I want to see my daughter grow up and be there for her! There have been lots of tears, anxiety and crap still ahead of me. I don't like the "you can carry on with your life after this is over" either as it is life changing.

Just catching up with the thread.
@Babamamananarama really sorry to hear this. I hope you get good scan results. 5 days in isolation following this sounds horrendous. Have a 🤗 and a handhold from me.

@Vinorosso74 thank you. I guess everyone's options are going to be different No two cancer experiences the same and it sounds like you've made a sensible choice.

Well my CT scan was very positive - my lymphoma is showing a very good response to the chemo so far. The reasons for the swelling are unexplained currently but my consultant is looking into it further. But good news that I need to take away from this is that chemo is working. And I think they'll now not bother with the scan o was meant to after chemo 4, so I've potentially saved myself a few weeks of scanxiety too.

balkan when will you get your bone scan results?
Keeping it all crossed for you. Waiting for results is so hard.

Oh the bloody people who don't know what to say!! I think a lot of people just have no emotional tolerance for staying with/absorbing hard stuff, and so they have to deflect it with 'at least blah blah/you are so brave' etc rather than acknowledge how shit it is.
I had someone I had literally just met tell me in the course of a brief conversation that she was terrified of getting cancer and that her brother had died of cancer and it was horrible. She asked if I had kids and then looked horrified when I said yes. Ok, well, I know all about how YOU feel about my disease now; thank you. 

Just a quick update that my scan was clear, and the tiny lung nodule is still tiny, they're obviously not worried about it. I'll be starting on niraparib (not olaparib as I'd thought) at the end of May. Been totally overloaded with info and now feeling shattered - but very relieved!

@Bloodybridget and @Babamamananarama - great news and very pleased to hear it!

@Babamamananarama @Bloodybridget great news re scan results

One foot in front of the other and one day at a time. I feel like I'm just grimly trudging onwards. Nothing brave or heroic here. More just submitting myself to whatever treatment is next with a dreadful determination not to die.
God that's a bit depressing even for me. My parents visited at the weekend. My mum was shocked that I looked so well and seemed a bit disappointed I wasn't sicker. There's no winning with this.

Fooff is improving slowly. She thanks everyone for the good wishes.

@Babamamananarama @Bloodybridget yay for good scan results

@Babamamananarama and @Bloodybridget woo-hoo re: scan results! Really SO pleased for you both.

My bone scan showed no evidence of the old injury, however, they found another trauma injury which corresponds with me being blown off my bike by the wind during Easter. It’s tiny they said and after consulting with the doctor decided against more detailed imaging. So, the end result was it’s all clear. But I really want to hear from my oncologist before I really believe this. The bastard cancer has taken away all the trust I have ever had and has turned me into a suspicious old witch. How many rib injuries can one get/have??? One goes away, another appears!

I thought I would be overjoyed but actually just feel immensely tired, both physically and emotionally. Wiped out. I feel like I could sleep for a 1000 years.

I had a total moment of utter terror when they started the scan - when the machine goes so close to your face (it starts scanning from the head down), plus a mask on my face. I just about bolted from the table.

@Babamamananarama @Bloodybridget so pleased you both.

@PhannyPharts I had lymphectomy with reconstruction using my own tissue LICAP lateral intercostal artery perforator basically using my back fat a bit like a surgical version of how you are supposed to adjust yourself in the cups when you put your bra on. I have a scar that goes partway around my back but is under my bra so shouldn't be too noticeable when its all healed. I can raise my arm above my head but not fully yet , my op was two weeks ago.

I had my pathology results today over the phone the margins were clear and they took three lymph nodes which were all clear. The next step for me is to meet the oncologist and discuss radiotherapy and hormone therapy I'm oestrogen positive, they are also going to do oncotype testing to see if I would benefit from chemo to prevent reccurence. I think they said my radiotherapy would be daily for 5 days about 8 weeks after surgery I'll have to check when I get my letter.

I'm not allowed to drive for two more weeks but I can take my stockings off, good because they went in the bin last week. I'm desperate to go for a run I didn't ask so they can't say no but I think I'd better wait a bit longer

Hi all. I have some food while on chemo questions for anyone who might know the answers:
Should I avoid Parmesan? I decided I should because it’s made with unpasteurised milk. How likely, in reality, is it likely to cause me any harm?
Silly question probably: If I’m meant to be avoiding anything antioxidant e.g. high strength vitamin C, should I avoid juicing fruit and veg?

@Lunificent I haven't avoided anything but then I didn't really during pregnancy except for liver and pate. I'm not very good at following rules in general and I don't think the evidence base for the UK list of foods to avoid is very compelling. There is more listeria in bagged salads than unpasteurised cheese.
However Parmesan is on the safe to eat list anyway because it is a hard cheese.

Great scan news all round @Bloodybridget @balkanscot @Babamamananarama

I have been to see my gynae oncologist for a good rummage, and she has declared that I just have a semi circular ring of scar tissue that is a bit tight so I need to keep on with the dreaded dilators. She managed to touch my cervix and use a small speculum so it isn't completely wrecked in there. I saw the lead radiotherapist, the chemo sister and one of the other chemo nurses was in with my oncologist and they all said how good I looked. It was nice to catch up with people and I felt that it was a positive appointment. She's going to refer me to the gynae near me that specialises in menopause and ask her to do shared checks every three months. I've just got an MRI scan in a few weeks to check that I have NED.

Great news @balkanscot and I’m not surprised you feel completely drained

Well done too @MrsPnut so much positive news today which has brightened my mood considerably

@Bloodybridget, @balkanscot, @Babamamananarama and @MrsPnut so pleased for you all! So lovely to hear all of this.